Inner Ear Hair Cell Regeneration — Maybe We Can Know More

At least you have seen some improvement by some means or other John.
That’s reassuring.

And of course our perception of our own tinnitus volume is also a volatile thing.
I wish you the very best as always buddy.

You have always been a magnificent battler for our cause.
Dave x
Jazzer

 

I was hoping to be completely cured, which did not happen. If you do go do this, know that you are basically paying good money to be a lab rat. If you are going to go, the sooner would be better. I'm not going to tell you not to go, but he is claiming that the treatment is for hearing loss, with tinnitus being secondary and so far, neither Glenn nor I have really shown any improvement on our audiograms.

 

Also, another man I know named Aldo went, and he is telling me he is worse now, but he also had an additional trauma from an MRI. When I was doing research into the growth factors I was very well persuaded that it could in fact heal the cochlea, however, the evidence from Glenn and I just isn't there. If you did go, and you didn't improve, then I think that would be enough to shut any notion of this down.

 

If you have hearing loss due to a slap why do you have hearing loss also in the other ear?

 

What are you referencing here??

 

I would guess night clubs (early 20s) but no tinnitus in my left ear at all...

 

I had bizarre symptoms like inability to localize noise direction and inability to hear layered sounds normally if they weren't isolated (despite normal audiogram in those frequencies) -- they would sound slowed down or absent, difficulty to explain.

I researched the kind of ototoxicity that I had and saw that my symptoms matched a very rare sequella, which is kv3.1 channel deformation in the brainstem. I recently wrote to dozens of researchers in the field of channelopathy research and all the ones who wrote back agreed that, based on my symptoms, it seems highly likely that's what I have. My new otologist seems to agree but there is no objective test for it. It gets confirmed by autopsy only.

 

its a neurotrophic supplement

 

I’m sorry for your situation. Have you given any thought to FX-322? They’re gonna be enrolling for Phase 2a here in the next couple months. Based on the inclusion criteria for Phase 1B you’d be a perfect candidate for this trial. Best of luck to you. We’re all in this together.

 

I honestly believe there’s hope for FX-322 treating ototoxicity damage. In their 2017 paper they treated hair cells that were deliberately damaged with gentimicen and were able to restore the hair cells upon exposing them to FX-322. Also, their drug activates a chemical cascade of events that restore hair cells in their native matter, which includes neuron synaptic outgrowth from the newly regenerated hair cells. One would hope that this cascade of events would also help partially regenerate some of the damage done in this area.

 

I'm completely confident my cochleae will be repaired or at least improved within a decade. Fx-322, most likely. Unfortunately, I believe my brainstem was also affected because my symptoms suggest more then coclear involvement and a channelopathy in the auditory portion of my brainstem explains my more bizarre symptoms perfectly. Ototoxicity with some compounds (in some individuals) can affect both the cochlea and the kv3.1 brainstem ion channels by binding to and then deforming them.

I hope I'm wrong and there is another explanation.

 

I have to agree. Perhaps it'll be something they will formally investigate as part of the trials. The only reason it may not work is if the ototoxic substances damaged the progenitor cells themselves.

 

In cases of cisplatin induced ototoxicity, yes, but in cases of gentimicen I believe in only kills the hair cells themselves. I could be wrong though, but I haven’t investigated this fully.

 

This a bleak and very real possibility. If ototoxicity kills hair cells, why not all the cells around it too?

 

Not being able to locate the source of sound is relatively normal (do you remember the old Nokia cellphones, all with the same rington? At a meeting a cellphone would ring and everyone was checking whether it was their phone. That means people in general dont hear so well, in terms of locating the source or direction of sound). And what you referred about the sound not being layered anymore, I couldnt have described it better, that started happening to me like this year when I lost more hearing. It may have to do with synapsis or interpretation of sound.

Hearing is very complex and an audiometric test is too simple to properly evaluate it. For instance I can understand TV at a low volumen at home, in silence, but I hear the speech like wah wah wah.. I just understand it. In noise there are voices of some people that, due to their pitch, I hardly understand at all.

 

How do they know that ototoxicity kills hair cells. Dissection and examination I guess. Why not all the cells around it too? Same answer, probably.

 

Thank you for your response and for giving me at least some hope that it may all be cochlear for me. My audiogram is completely normal until 12000hz but maybe it is all synaptic damage. Maybe otonomy can help.

 

@Juan , do you have trouble listening to music? Ie whole parts will be missing even in frequencies you hear normally in. For instance, a keyboard part you could hear if you isolated it from the rest of the song on a mixer but in the song, it's just gone? Do things ever sound like they are the wrong speed to you?

 

I would love to. Their headquarters are 15 minutes from my house in MA. But their first trial was in Texas...

 

In that case does that mean you will stop actively cheerleading for it?

I'm also in MA and would be interested in a trial if the side-effects aren't too scary.

 

This is honest of you to say.

 

No, the first few years this never happened to me. Actually the sounds I had more trouble with would be enhanced, like the very high-pitched sound of a triangle or a high electric guitar.

When I lost hearing the different instruments in a song just sound blurred, like mixed together. Also if I listen to a sound individually I can hear it but maybe not at the right pitch, maybe it sounds lower that its real pitch.

After a noise incident what my hearing would do, and this may be just my case, is enhancing the middle frequencies and shadowing (lets say) the extreme frequencies at the low and high end.

What you say about things "at the wrong speed".. I think that may be just a consequence of hearing loss, even if it is mild or hidden hearing loss. What I feel is that the sound does not travel as fast to my head as it did pre-H or at the early stages of H. This is just because my hearing is no longer so sharp.

 

I have hearing aids they mask the sound, to be honest I have been monitoring the effect & I feel my T is heightened after using this so I’m ditching the hearing aids, using apps for masking & learning to live with T. My T frequency is 11000HZ & sometime when I move about to quickly I.e. exercise, brisk walking, I get a Marching sound & my nausea can so bad that I can’t move around or I get sick. This forum as helped a lot thanks for great input from you all

 

Just wondering for smart people on this thread, for those of us who developed visual snow after getting tinnitus from an acroustic trauma or chronic noise exposure, what's the likelihood of repairing or regenerating broken hair cells leading to a downstream recovery of visual snow?

 

This likely depends on whether or not the visual snow is a direct effect of you getting your tinntius, and not you attempting to fix the tinnitus using substances such as Trobalt (also known as Retigabine) which would have given you visual snow.

The short answer though is we don't know, it's possible, given time and brain plasticity that if the cause of your tinnitus is fixed, your visual snow may stop along with it a few months later, but quite honestly it's impossible to tell until we have enough human models on trial that have had both visual snow and tinnitus and eventually got their hearing back (something that hasn't happened to this day).

That said, not to crush peoples' hopes, but if your visual snow is the result of you messing with your Potassium channels, chances are likely it will stay for the rest of your life. (i.e. Make sure you are well informed before messing with your brain).

 

What do you mean by saying that ?

 

I mean by using medication:

https://en.wikipedia.org/wiki/Retigabine

 

It is important to take the prednison in the morning... Otherwise you encounter sleeping problems...

 

And anxiety attacks... heartpounding... and...

 

Action on Hearing Loss sponsored research where a large-scale screening of already FDA-approved drugs and bioactive molecules is performed in zebrafish to find new drugs that restore hearing. This research will conclude next month. The study is performed by Dr Lavinia Sheets at the University of Washington in St Louis. I find the part where they are screening drugs the FDA already approved for other pathologies particularly interesting.

Anyone know more about this?